Mother-Daughter Reflections On This Mothers Day

Mom-babymeMother’s Day has been sneaking up on me little by little this year. I mean, I think about my mother just about everyday but lately thoughts of our relationship throughout my lifetime have been presenting themselves in different ways. Even though, and probably in spite of Alzheimer’s disease, I considered the last years of her life a coming to terms time for us. We were able to put aside the past and accept each other for who we each were without fault. That was monumental.

As far back as I can remember in childhood, my mother was not like other mothers. First of all she worked a lot and although I didn’t know it at the time, a career is what she had aspired for herself since she was a child. It wasn’t easy for her, because at some point during her early teenage years, she developed a disorder, which would go on to cripple her life for the rest of her days. OCD is a disorder that completely changes the way a person thinks and perceives things and in turn with how they are able to react to the world around them. It can show it’s ugly head in many ways, but for my mother, OCD manifested itself with a fear of germs. She spent her life alienating herself from people, not touching them and also keeping herself from touching most things around her, both inside the house and out. She spent a lot of times washing and re-washing her hands, over and over and over again until she was raw, day after day, year after year. I believe that Howard Hughes had the same disorder.

Eleanor_Sarter_Lynn_3With that being said, having me wasn’t exactly in her plan, nor did it make her life easier, but being a young, beautiful and vibrant woman, seemingly in love, she made the best of the situation. From everything I can see in our old family photos, she both welcomed and loved me after my birth. In the photographic trail that I have, early on it looked like a pretty normal family from the outside, although I’m sure that she was struggling with her problem with every minute. Of course, over time, her symptoms got worse and the marriage fell apart, leaving my mother to take me and leave home. I remember that I was about five years old. We went from apartment to apartment to Ozone Park where my grandparents lived to Jackson Heights through the years, and looking back, we very much lived separate lives under the same roof. It seemed normal to me because it was all that I knew.

Being younger, I really didn’t understand that we were different than most of the other families around. Once I got to about 5th grade, I was well aware of the differences because I started to make friends and visit their houses after school while my mother was at work. I spent a lot of time at my friend’s homes because it felt very good, very right. In a sense though, I really didn’t know or understand why we were different because back then there was no name for OCD, I had no understanding of what was going on. We were living one day at a time, never thinking of the next day.

Eleanor_lynnIn reflection, what I know for sure, I am today the person I am as a result of the environment I grew up in. Although I consider myself to have turned out pretty good considering, with her goodness rubbing off on me, I find that I too am different than other people around me, but in a very different way than my mother. I of course, don’t have OCD, but I do have walls built around me, which was a learned behavior. I can be secretive and very much a loner, being very reclusive. I rarely feel comfortable socializing in crowds and don’t go out of my way to socialize. Not that I am antisocial, but I feel more comfortable by myself. I guess I’d say I am social on the inside, but not so much on the outside, although there are always exceptions.

Yes, I’d say that my mother’s OCD affliction affected me to some degree, but I don’t blame her in any way…she absolutely couldn’t help it and did the best that she could. I admire her for loving me the way that she did through all of her problems and bumps in the road, right till the end. Now, I understand her and why she was compelled to act the way she did and more over, I am learning everyday what behaviors that I have walked away with as a result. It’s taken me most of my adult life to understand why I am such a loner with such high walls. Actually, in hindsight, it was Alzheimer’s disease that brought closeness and understanding to a lifetime in our relationship.

My mother Eleanor Van Meter was a very strong woman who was dealt a bad hand in life, who still managed to deal with her issues on her own, support me, even if only by phone and still remain the classy lady that she was.

Happy Mother’s Day Mom!

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The First Anniversary. Today is the Last of the Firsts

 

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Today is the first anniversary since my mother, Eleanor Van Meter passed away from a combination of diseases including Dementia/Alzheimer’s, Parkinson’s and Leukemia. September 28, 2014 marked the beginning a year filled with firsts. The first Halloween, the first daylight savings time, the first Thanksgiving, Christmas, New Year’s Day, Mom’s birthday, Valentine’s Day, Easter, Memorial Day, Fourth of July, Labor Day, etc. I’m sitting here on September 28th, a year later in 2015, reflecting on what this year has meant to me.

I didn’t exactly know what to expect during the first year, but I can see that at least a year is needed to come to terms with a death of a parent. Because the year after a death will always be significant while dealing with of all the firsts, it’s probably the hardest year you will ever go through. The fact that it’s a parent, compounds the intensity even further. I don’t care if parent and child got along well, or didn’t get along well, if they were best friends or estranged or indifferent, the effects of losing a parent are unique, because your parents are the reason you are here on this earth. There’s never been a time since you were born that they haven’t been on this earth, until they pass away. Again, it doesn’t matter if you saw them everyday or once in a year, it’s a powerful event for the child/adult to process and come to terms with. For me, this past year was a time to create a new normal.

Photos: (1) above: Mom, young and full of hopes and dreams, (2) below: Mom (Eleanor) and big sister Lillian, (3) Mom and Lynn (me) in my room at her mother’s house. Contrary to this photo, dolls were not my thing, but it was a gift from my father….soooooo, (4) Mom, a few weeks before her death.

Eleanor-LillianMom had a combination of a good life and tragic, all rolled into one. When I look at her childhood photos, I see a happy, normal little blonde haired girl who obviously looked up to and adored her big sister Lillian. That feeling had reflected in our many talks over the years. As she matured into a young adult, she somehow started showing symptoms of what we now know to be Obsessive Compulsive Disorder. It was that disorder that was to become the tragic part of her life. She had said that she was sick a lot when she was young, causing her to miss a lot of school events that were important to her. She thought a possible reason for the OCD was in her determination to avoid germs at any cost. She also once mentioned that a bout of strep throat could have been the cause of the disorder, but I suspect we’ll never know the real reason. What I do know, is that this disorder had caused her 2 marriages and a lot of lost joy in life that could have been. OCD held her hostage in a solitary world which finally left her communicating through phone conversations as she got older.

During her working years, which was also something that she aspired to do since childhood, was a success. She had prestigious positions over the years and was able to hide her OCD while at work. For that, I am grateful, because working in Manhattan was probably her biggest childhood dream fulfilled. Through her working years, she met Dwight Van Meter, her second husband and the love of her life. He was 20 years older than her but it was so obvious that it was a relationship that was made in heaven. He passed away in 1985 and she spend the rest of her life mourning him. Strangely, they were married on September 28th, the same date that she died. Coincidence? I don’t think so. They are together again.

Eleanor VanMeter_Lynn BrophyMy mother was a really good, kind and decent person throughout her life. She raised me the best she could with the challenges that she faced everyday, and with the help of her mother, my grandmother, I became the person that I am today. I can say that I was quite a handful, but in the end, it all worked out well. She worked a lot and I was very much on my own, but it was through her and her mother’s family traditions and morals, that I was able to pull through in tact.

By the time she came to live with me all those years later, she was quite a bit older, very frail, set in her ways and showing the signs of dementia. I didn’t realize at first but after awhile, it became obvious…and even then I didn’t know what was down the road. Dementia/Alzheimer’s disease is an awful thief in the night, stealing your memories and dignity without a concern of the chaos it causes within the brain of the person it’s destroying. While she was here for over the course of 6 years, we were able to have nice conversations, dinners together, watch tv shows, get-togethers with neighbors her age, go shopping…in short, we were able to resolve and make peace with each other in the last years of her life. Not that it all was good times with the challenges of the progression of the dementia, but the good is what I choose to remember.

mom-now1On this day, September 28th, 2014, things were happening all over the world:

  • George Clooney and Amal Alamuddin married in Venice.
  • Volcano in Japan erupted with 30 feared dead.
  • Baseball season comes to an end.
  • Kenyan man Dennis Kimetto sets marathon world record.
  • Air France Pilots end strike after 14 days.
  • Brigitte Bardot turns 80. Ben E. King and Hilary Duff have birthdays.
  • Eleanor Van Meter, my mother, got her wings.

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Remembering Mom, Our Struggles, Our Blessings and Dementia on the First Mother’s Day After

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It’s been 8 months since Mom passed from her dreaded diseases and the first Mother’s Day since, is upon me. At this time, I can’t help but reflect on our relationship over the years, both with dementia and before dementia and Alzheimer’s worked it’s evil magic.

My mother, Eleanor Van Meter, had always wanted a career, going as far back as her childhood. Some kids dream of being married with kids and others yearn to be in the business world, in the big city, as in the case of my mother. As a matter of fact, we had that very discussion after she came to live with me. She admitted that motherhood and having children wasn’t on her list of things to do and that working and career had been her big dream in life. But, as fate would have it, “oppsey”…I came along, much to her surprise. I’m sure my arrival put quite a damper on her plans in the business world but she stepped up and made the best of it, dealing with it in the best way she was able at the time, with the help of her parents, my grandparents. I think that even with all the adversities and bumps in the road throughout the years, I turned out okay. That means to me, that she did good!

Photos: above: (1) Mom and Me, on vacation, (2) Mom and Me at a few months old. Below: (3) Mom and Me at Greenwood Lake, (4) Mom with her grandchild Shad

Eleanor_lynnI remember that conversation as if it were yesterday, although in reality it was about 4 years ago. She was already in the throws of dementia but it wasn’t at the crippling stage at that point, so thankfully, our conversations were both informative and memorable. Even though nobody would especially choose to hear that kind of news, I wasn’t surprised, nor was I resentful. I guess, I kind of sensed it as I was growing up. Looking back at childhood, there wasn’t a time that I can remember that Mom wasn’t working in NYC at some big company, leaving in the early morning and arriving back home at night. I was alone a lot, coming and going pretty much whenever the spirit moved me. Everybody, including my mother, was entitled to live out their dream and although life wasn’t easy back then for either of us, she adequately provided for me. We were far from well off financially and there were times that I walked around with holes in my white keds and looking like a ragamuffin compared to my friends, but hey, that was the style back then…bobby sox and keds with holes in the toes! It’s ok…I was never hungry and always had a roof over my head. Also, a lot of time was spent at my grandparent’s house and I loved being there too so it was all good. They didn’t work and I felt very comfortable with the dynamic and normalcy of that household, which I’m sure, is part of the reason that I am as normal as I am today.

As a kid, I recall meeting Mom every night at a designated spot after she got off the train from work and we would go to eat dinner out together. We would go to Jahn’s, get Chinese take out, sit at the Hamburger Express and watch the train deliver our burgers or just get a pizza. We didn’t eat home much, which probably accounts for my lack of expertise in the kitchen and my disinterest of home entertaining! I could choose to look at this in one of two ways….one, we were so different than my friends who had home cooked meals every night, boo-hoo….or two, none of my friends got to eat out every night, so I’m pretty lucky! I chose the latter way to think of it! Actually today, I almost never get to eat out anymore, so it’s looking pretty appealing to me!

shad_momI have memories of Mom trying to wake me up in the morning to go to school…probably around the grade school days. She’d come in my room full of energy and determination, singing “You’ve got to get up, You’ve got to get up, You’ve got to get up in the morning”.  It sounded like an army style thing with a bugle, something that she might have picked up during her growing up years…but I can remember her singing like it were yesterday. After the song, she would bring in a cup of tea, sometimes different types of tea such as Earl Grey, Darjeeling, Oolong or English Breakfast tea. She is the one who introduced me to tea and the different varieties that I still love to this day.

I also remember the day I turned into a girl from a tomboy, as we stood in front of the mirror in my bedroom trying to figure out how to make my hair into the perfect Flip with a headband, just like Patty Duke’s hair. The headband style loomed large in my transformation as I recall. Even though we were not like most mothers and daughters, she tried to do good things for me as best she could as I was growing up. It wasn’t easy either since I was quite a handful being a hyperactive child with very rebellious tendencies.

As adults, our relationship was mainly by phone since she had moved to California back in the 70’s. In California, she married the love of her life Dwight Van Meter, and I was living life hippie style on Long Island…Age of Aquarius! We sure did go through a lot of stages through the years. But we had great conversations, mostly on Sunday nights just as her and her own mother once had in adulthood. We talked about everything, the happenings of the day and week, the dogs and their antics, about her job and books that she might have read. Later, we talked about writing and illustrating a children’s book together, which never came to fruition, although, I’ve considered following through with writing it in her memory. There were a lot of little things that were left unsaid due to her disease that I now wish I had said, but even though, I feel that we did come to terms together with our relationship…and she came to terms finally, with her OCD disorder that crippled most of her life.

No, life wasn’t perfect…she wasn’t a perfect or typical mother and I wasn’t a perfect or typical kid, we were just human. BUT…she was my mother and I was her kid and we both did the best we could in an imperfect world with the cards that we were dealt. I don’t have a lot of early memories, but I will remember her by the ones that I do have. Our time together this time around didn’t come with huge, monumental happenings and events, we were simple people coming from simple beginnings living a very simple life. Hopefully, through the years, little memories of the past will come back to me and I will consider them a visit from my mother.

Happy Mother’s Day Mom, wherever you are!

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Friendships Make Dementia Sufferers Feel Connected

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Thinking of Mom today on this beautiful sunny day in April. Just a year ago, she was here, in my house, shuffling around, swiping cookies when nobody was looking. I got to wondering about friends and if she had many in her lifetime? I know she had a few friends while she lived with me, but did she have any when she was living on her own in California? I tend to think not, with her OCD affliction and the onset of dementia, which can make people rather reclusive and paranoid. I’ll probably never know the whole story but I am glad that she did have a few friends, that I know of. Friendships make dementia sufferers feel connected.

Photos: above, (1) Young girl Mom, Eleanor on the right, (2) Cookie Monster, Mom sneaking a cookie…sort of.
below right, (3) Mom on the phone with Noreen looking very happy and content, (4) below, Mom with Gene and Eleonore, our neighbor friends.

In childhood, I know that she had friends, since I do have a few very old photos of her posing with a friend as in the photo above. Mom is the girl with the bow in her hair, at a time when life was so innocent, promising and new. She looked happy with that little friend of hers and although I don’t know the girl’s name, I’m sure they had fun times together.

Eleanor-noreen

When my mother moved in with me from California, she soon started having regular phone conversations with Noreen Barsh, a long-time friend from her working days in New York City. As she told me, she actually hired Noreen back in the day and they soon went on to become great friends which had carried on through the years. I remember hearing her talk about Noreen on our Sunday night phone conversations but I never knew very much about it. She kept pretty private about things, not sure why, but I think that was just part of her personality. Once living here though, it became very apparent that they were wonderful friends, speaking on the phone for at least 2 hours at a time. I was very grateful for Noreen as she would be a extremely grounding force for Mom once dementia started taking hold. Even in the last year or so, when Mom was losing her words, it was no matter, Noreen would just talk and talk and Mom would just listen and listen. Sometimes, she would even start speaking back to her, which made all of us scratch our heads in wonder. It would take a friend like Noreen to draw her out of her void, maybe from recognizing some of the old experiences that her good friend spoke about. Noreen knew it was important to speak about old times with her, knowing that she just might remember way back when…and sure enough, it did work. Noreen would call her every single weekend until her death, even speaking to her in her last day, lying in the home hospice bed while unconscious, I held the phone to her ear while she said goodbye to her old friend. She was a loyal and wonderful friend, right until the end. I still call Noreen these days once in awhile to check in on her, as she is in the same age range as Mom, in her mid to late 80’s. I value our conversations now that Mom is no longer here. She is a constant reminder to me that Mom had a life once, working in NYC, having lunch with her good friend at the automat, no doubt! The automat was a very popular place in New York City back then. I remember, she even took me there once, as I have a vague memory of it. Mom once, had a nice life and that thought makes me very very happy.

While my mother was with me, dementia started taking hold in what seemed like over night, but in reality only a few years before becoming unmanageable, I would make a point of having our neighbors over every once in awhile for a pizza and conversation and Mom would actually get dressed up and join us, which was the whole point. My friend Eleonore Zeger and Gene, our neighbors across the street, also my good friends, are Mom’s age. Mom’s name also happens to be Eleanor, so it would get a little confusing sometimes, but it added a few laughs along the way. Eleonore, really liked Mom and would come over during the week to look in on her while I was at work. She would bring her little gifts and sit to talk with her to get her mind working. Mom loved seeing them and would sit and listen to everyone talking back and forth, even joining in once in awhile. I was so grateful that she would come out of her room and join us, because it is so important for people with dementia to feel needed and a part of something. Little get togethers would definitely make her feel like she was needed and wanted, a part of something fun. She would even sit and have a little glass of wine, although she didn’t really drink much these days, it did made her feel included.

Gene-Lynn-Mom-Eleonore

I guess, today, I am thinking about all of this because of Spring’s arrival, a time of rebirth, regrowth and renewal…another season, new beginnings, a second chance to make it right. It’s a time to get things done, be outdoors, socialize, reground and revitalize yourself until the throws of winter return. After a very sad fall having lost Mom to dementia and leukemia and a particularly long and nasty winter, spring is being welcomed by all, especially myself. It’s a time for friends and a time to welcome new friends and long lost family. It’s a time to reconcile and come to terms with what is, the cycle of life with all it’s joys and sorrows, never forgetting those that we have loved who have passed.

 

 

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Art Therapy for Seniors With Dementia Can Be Beneficial

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With all the other struggles that my mother suffering with dementia had faced, I always found that when she was in her creative mode, she thrived. Her creativity seemed to blossom as she began her decent into dementia and there were times that it kept her busy for hours during the day. That’s not to say that she didn’t get creative before dementia, she did, but I think that her life of working, left her with no time for much else. Now, at this point in life, I believe that art therapy for seniors can be a wonderful thing.

When my mother lived in San Diego, over the years, she would send cards for special occasions that always had her special touch on them. Sending store bought cards as is, just signing her name at the bottom wasn’t ever good enough for her. She always had to make them just a little bit more personalized, more colorful and more special for the person receiving the card. She wasn’t able to buy expensive gifts, but her cards were an envelope full of love, thoughtfulness and happiness.

After she came to live with me, she of course didn’t send any more embellished cards, but while she was able, she would make little cards and notes with her colored markers and white paper, always trying her best to put thought into what she was saying, which you could see became a struggle for her after awhile. But it didn’t matter, she still shined through in spite of the struggle. One autumn day while I was at work, I came home to find brown paper bags cut into the shape of leaves and scotch taped to white paper. There were even 2 that were reversed, showing the brown paper through the diecut in the white paper. I thought that they were so creative considering the stage of dementia that she was stuck in, that I hung them on the wall in her room, just as you would your child’s artwork. I was glad that she was still able to engage herself into something artistic and follow through to complete the project. She was making a connection with the brown leaves falling from the trees outside her room and created something out of that thought. It was child-like, but just knowing that she was able to do that in her steady void, made me happy.

Photos: Cut out leaves from brown paper bags taped to plain white paper made by Eleanor Van Meter, Eleanor Sarter, in the throws of dementia. Good job!
Below: Mom looking very young and pretty with her whole life ahead of her. Who knew what the future was to hold for her?

leaves3 leaves2Some days while her Home Health Aide, Cardine was here, they would sit and color together in the afternoons, when the sun was coming in from the back of the house where her bedroom was. Cardine would encourage her to do puzzles, games and various other things but she really seemed to get a kick out of putting color on paper…or clothes…or sheets or her blankets, haha. After awhile she would just put her markers on anything, which isn’t really where I wanted her to go with this, but after all is said and done, if it made her happy, why not.

She liked to have notebooks and purple and pink pens where she would try and create characters for a children’s book that we had once planned to write together. Since she was the writer in the family, she was going to write the story and I was going to do the illustrations. Of course, we never got to that point, she’s was no longer capable of doing that, but I still have hopes in trying to write that little children’s book, with the help of her ideas that she had left me with. Why purple and pink, I’ll never know, but it occurred to me on how ironic that purple is the also Alzheimer’s color…very symbolic. Once a dementia patient gets fixated on something, far be it from me to try and change their mind….she wanted purple, I found all sorts of purple pens for her every time I went out.

mom_young5She was also once, a very good poetry writer and had folders of poems that she had written in the past. She would look over them for hours, organizing the pages and just staring at each page and I know in my heart, that she wanted to write more poetry, but her brain wouldn’t cooperate, which I found very sad. Even though she wasn’t able to write, she wasn’t done yet! She still had that need for creativity in all different forms, but she was no longer able to handle anything more than scribbled color on white paper. What can be sadder than losing brain function and knowing it’s happening to you? I know that she knew because we had talked about it at times. She knew it was happening…how awful to know the things that you want to do and say, but not being able to do it?

So, what I have learned from caring for my own mother with dementia, my advice for caregivers of Alzheimer’s and dementia sufferers would be, to get them involved with the creative world, in direct line with the capacity that they are able to handle without getting frustrated. There are so many different forms of creativity that can be introduced to them…there is something for everyone. It doesn’t have to be complicated, but just something simple where they can express themselves and will make them feel as if they accomplished something. There are special programs out there that focus on music and art therapy for seniors. Some actually come to the house for home bound patients and others can be found in adult day care facilities. You can research this for your own area, or you can set up your own ideas with your family member since you know them best. With stores like Michael’s and Joanne’s
Fabrics, there are all sorts of ideas for simple projects to try. It stimulates and challenges their brains, which is very healthy for people in brain failure. It can help to slow down the progress of the disease, plus make it a good day for your loved one. And we all want a good day!

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Home Health Aides For Dementia Patients Can Be a Wonderful Thing

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Taking care of a parent with Alzheimer’s disease or dementia can be very challenging and also exhausting for the caretaker. I was many years into it before I realized that I needed the help of a Home Health Aide. I was lucky, the first timeout of the gate with Cardine. She was the first Home Health Aide that was send to help with my mother suffering with dementia. She became my hero very quickly.

When first taking on a parent with dementia, we go through so many different feelings and experiences, that often leaves our heads spinning and feeling frustrated all at the same time. Many of us don’t have a healthcare background or any resources at our fingertips to help us cope and make sense of the situation that unfolds before our eyes on a daily basis. Really, we are flying blindly into the path of the oncoming train, sometimes, not understanding what’s ahead.

When I first took on my mother, after moving into my house from her California apartment, I noticed a few little things, but like we all do, it’s brushed off as “oh, she’s just getting older”. After awhile the symptoms get worse and we know that something is very wrong. After we seek a diagnosis, we start our journey into the unknown with our loved one. Life for your parent will never be the same and for you also. It’s almost like when you become a first time parent, changing your life forever, only this time it’s with an unhappy prognosis.

For years I took care of Mom and we went through all of the different stages that most dementia patients and caretakers go through, paranoia, accusations, hiding their belongings, aggressiveness, depression, sadness, incontinence, denial, lack of interest in daily hygiene, preoccupation in trying to make sense of paperwork, confusion, wandering, getting lost, looking for her mother, loss of words and substitution of words, etc. There were so many more things that I went through with her, and since we are all living individual experiences, I’m sure others have gone through even different things that I know nothing of. My situation with Mom, finally came to a point where I could no longer leave her alone while I was at work because she was a safety hazard to herself and others. That’s when I started researching and got the social workers involved, finally getting on the right track in finding a Home Health Aide for Mom.

mom-cardineIt was a long road to learning what to do in order to get help at home, but through Mom’s doctor, who had earlier applied for the Visiting Nurse Service to come to give her B12 shots every month, I was introduced to the social workers of that organization. Since her condition was becoming a safety issue, we discussed our options through meetings and house calls. Of course, I couldn’t afford to go out and hire a Home Health Aide on my salary, so I was naturally feeling very stressed on how to bring help in. Working was something that I must do in order to survive, it’s not debatable as with so many caretakers in the same situation these days. It’s a huge dilemma for all involved.

Needless to say, we found a way and soon thereafter, Cardine arrived. She was the best thing that had every happened to us since Mom came to live with me. We were so lucky to have her as she was experienced, compassionate, concerned and very good at her job. She was mentally present at all times, always putting my Mother’s best interest first. I was very relieved that we were so fortunate to have found her.

Cardine had 12 hour shifts, 5 days a week making it possible to commute to my job and keep the roof over our heads. She would take care of every need that my Mother had, personal hygiene, meals, bathing, companionship, arts and crafts, interaction and keeping her mind engaged and active. She was a one woman band and a rock star in her profession. While I was at work, I was absolutely sure that my demented Mom was in good hands and also safe at home. She wasn’t lonely, and she was content and well taken care of. What more could I ask for?

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Photos: (1) Cardine on Mom’s 86th birthday, (2) Cardine drying Mom’s hair after a shampoo, (3) Cardine and Mom, Eleanor Van Meter doing puzzles together.

Home Health Aides are a wonderful choice for your loved one.

Bottom line for me, Home Health Aides are a wonderful choice for your loved one. If you can find the right fit through an agency, it will change your world and that of your parent.

 They will make the quality of life for the patient and the caretaker better, giving more time to enjoy with your loved one. If you find yourself in this situation, reach out to a social worker through agencies in your area. Reach out to the Alzheimer’s Association who can advise you further. Call the physician caring for your parent, who can open many doors. Although it may be different for others, In my experience, if you don’t ask them, they won’t offer any open channels for help in the home. You must present your needs and concerns to make it known that it is a safety issue. They will then advise what avenues and options are open to you. There are ways to provide a loved one with a Home Health Aide if you are financially unable.

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How To Speak To A Person With Dementia

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Taking care of a loved one when they are suffering from Alzheimer’s disease or dementia is a very challenging task as we all know. It’s probably one of the hardest things that you will ever have to do in your lifetime, but it is also a monumental accomplishment.

In the beginning, you will notice small things like forgetfulness and little things that might seem like unusual behavior, but even then, you might brush it off as a result of stress or being over scheduled. When the episodes become more frequent and you find yourself standing there scratching your head, because you know that there is something very real happening to them. Instinctively, you know, that life will never be the same for you or them.

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(Photos) (1) Eleanor Van Meter with her grandmother. So young and pretty! (2) Eleanor, Mom, with my father, Edward Brophy on a boat, somewhere, appearing to be enjoying themselves…with her whole life ahead of her. Who knew what the future would bring?

The behaviors, of course can vary with each individual, but many of the behaviors, I have found strangely enough, to be identical to other patients suffering from this disease, leading me to believe that the same part of the brain is effected in all patients at this stage of the disease. As in the case with my mother, Eleanor Van Meter, as she started into her journey with dementia, I found that she would be very paranoid. She would always be hiding things and then forgetting where she hid them. When she couldn’t recall where she hid them, she would make a beeline straight for me, accusing me of everything under the sun. I’d be sitting at the computer in my kitchen, where I normally would be on a Sunday afternoon, and she would shuffle in with a puss on her face a mile long and fury in her eyes, heading straight over to me. “Where are my credit cards, where are my medical cards? You took them, I know that you did…you were always a rotten kid, I should have never had you, you little shit.” The first time that happened, I was completely taken off guard, immediately I felt hurt because of her words and then I became defensive while declaring loudly that I never touched her things…I wouldn’t do that. In the beginning, I didn’t know how to handle this, knowing that I didn’t steal anything, but at the same time not knowing how to speak with her about it so as to not fuel the fire making it worse. Actually, in the beginning, you are so taken off guard, you are not thinking of anything except defending yourself and your honor against their harsh words. That train of thought would soon would change…

Through the school of hard knocks, I learned first hand, that arguing with someone who has dementia is an argument that you will never win. Never, never, never, ever try to argue with your loved one with dementia. You will NEVER win…EVER! They have a way of going around and around and in the end, you will be so frustrated that you will want to cry or explode, whichever comes first. So, how do we speak with our demented parents in that situation? I came to learn, first and foremost, be calm, speak softly, slowly and with compassion about them having lost their things. There is nothing that you can say that will make them believe that they hid it somewhere, forgetting where they put it. They can’t remember that little fact. They only remember where the object always resided before. Their brains are not working correctly anymore and certainly not in the way yours works. They honestly believe that you stole their things….because they certainly wouldn’t have moved anything themselves.

It’s important to sympathize with their loss and that the missing object will probably turn up, and how sorry you are that they can’t find it. Chances are, they won’t believe a word you are saying, but at least in the end, you know that you spoke with them in a loving way and that you tried not to upset them any more than they already are. Validating their feelings and their loss will only help the situation and you stand a better chance of calming them down and snapping them out of the dementia attack.

You might want to try and change the conversation to something else, such as I used to do with my mother. In hard times such as this, I would ask her if she would like to listen to Pavarotti, her favorite singer. She would always agree and we’d go back into her room and I’d pop the cd into the player, she would sit there listening as if she was in a trance, forgetting about her earlier concerns. This was usually the best part of her day and I was happy to see the peaceful look on her face once again as she appeared to almost be floating on every note that Pavarotti was singing. That was heaven on earth to her.

Funny thing, most times when my mother snapped out of a dementia attack, after accusing me of stealing things, later, she would always come to me and apologize. 

I would ask her, you remember acting that way? She would say yes…I can’t seem to stop once it starts. I always found that amazing…it was living proof to me that she was very aware that there was something very wrong with her.

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Life, Love, Friends and Career vs Dementia

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Now, reflecting back after Mom’s passing from dementia and leukemia, I had always known, that as she was growing up she wanted a career in the workplace. It was common knowledge and I remember her speaking about her childhood desires many times through the years as I was growing up. Although I can’t recall a lot, I do remember having to call her when I got home from school and her answering the phone with that very deep professional voice “Bozell and Jacobs” that almost sounded melodious. That voice of her answering the phone has been eternally burned into my mind. Bozell and Jacobs was a hi volume, high profile advertising agency where she had worked directly with one of the higher up executives. When her boss, Mr. Hoover, the Chairman of the Board moved on, she interviewed with Teddy Walkowitz, the head attorney in charge of the Rockefeller Family Foundation back at that time. This foundation handled the Rockefeller family fortune and was a very important position for her. As she had always hoped, her career had bloomed into something very professional and was something that she could be proud of.

The above photos: (A) A very young and pretty Mom sitting next to Morey Amsterdam at Bozell & Jacobs Xmas party in either 1958 or 1959, (2) Mom at party with Merv Griffin handing out envelops. He must have just called her name as she raises her hand. Below: (3) The love of Mom’s life, Dwight Van Meter

She held this position for many years to my knowledge. Along the way, I remember her speaking about other positions that she held, ABC, Forbes Magazine and Scientific Applications in CA, until she decided to retire to take care of her very ill husband whom she had met in Manhattan, back in the day. Somehow, she was in with the executives with different companies and met the love of her life, Dwight Van Meter. He became the most important thing in her life and with that she moved into Manhattan, leaving me in Jackson Heights with a girlfriend and her father. They went on to live together and then moving to Encinitas CA where her love of southern California developed. It was there that she worked at Scientific Applications after going through a routine of high security just in order to be hired.

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Van, as he was called, was about 20 years older than her and became ill at some point. After collapsing in his driveway, it was determined that he would come home for the remainder of his life, where my mother chose to retire and care for him. His death set forth many years of depression for her, diving even deeper into her OCD disorder. We would have our weekly chats on the phone on Sundays, just as her mother did with her and then as tradition would have it, she also did with me. While on the phone, everything sounded normal with her, always with the professional voice on the phone, but as I came to realize, everything was anything but normal. I didn’t realize how badly her condition had progressed until many years later when I traveled to CA to bring her to live with me six years ago.

Looking back on Mom’s life, yes, it was rather tragic with her OCD since the age of 15, but she had accomplished her most important life goals of being both successful and professional in her career in Manhattan. She had an excellence in everything she did in her professional life and was well liked and proud of her accomplishments…and so was I. She was very smart and sensible. Eleanor Brophy as she was known back then and later becoming Eleanor Van Meter, proved she was to be reckoned with in her lifetime. I am very grateful that she retired before her dementia set it as it would have destroyed all she considered dear in her life.

Her one living friend, Noreen Barsh had been with her since the early days in Manhattan and had been a faithful friend ever since, right until the end. After Mom’s death, Noreen, in several phone conversations from her home in Texas, had told me about how very classy Mom was at work. She told me about how much she was respected at work and how they relied on her. There were so many things about my mother that I hadn’t known before…especially about her professional life. The things that Noreen told me, made me proud of the person my mother was. Noreen is about 6 years younger than my mother and interviewed with Bozell & Jacobs back in the late fifties when Mom hired her. They went on to become great friends for the rest of her life. Noreen called her every weekend and sent her little things in the mail while Mom was living with me. Even though dementia inhibited the conversation, Noreen would just talk and talk to her, talking about the good ole’ days. Life with dementia wasn’t easy. God bless Noreen for that! It made my mother very happy when she called and was sometimes even able to sound normal and join in with the conversation. That is what’s called a lifelong friend!

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